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What is epidermolysis bullosa?


Living with Epidermolysis Bullosa
Burn blisters can form on the skin of people with EB simply from changes in room temperature.
Burn blisters can form on the skin of people with EB simply from changes in room temperature.
©iStockphoto.com/mahlrovitz

It's easy to overlook blisters because most of us get them infrequently, but people who suffer from epidermolysis bullosa must deal with persistent blisters. This can be a challenge, especially since blisters formed from friction develop most commonly on the palms of the hands and soles of the feet, which can make the disorder debilitating. Room temperatures must be kept constant, infants can't be held easily and sufferers often wear mittens to bed to guard against accidental scratching while they sleep [source: NIAMS].

As you can imagine, the lifestyle of a family with a member who has EB is unusual. But while inconvenience can be surmounted, pain is another aspect of EB that must be addressed.

If you've ever had a blister, you know it can be painful. But the sore was likely isolated to a single spot, like your heel after wearing a tight shoe. With EB, the painful bumps commonly form all over the body, leading to a great deal of pain for the sufferer. While there is no cure for EB, treatment is usually centered on pain management for the patient and preventing infection [source: NLM]. A doctor can diagnose the disorder and type through a skin biopsy and will generally prescribe painkillers. The patient and her family will also be versed in the art of applying bandages to keep blisters sterile and in recognizing infections that can lead to further complications.

The risk of infection is great in EB because of the high number of open sores on the body. Equally dangerous is blisters within the body. Blisters that form on the esophagus and trachea make it difficult to swallow and breathe. As a result of these symptoms, epidermolysis bullosa can be fatal. The junctional type, typically the only lethal type, has a mortality rate of 87 percent among infants [source: NLM].

Learning that your child has epidermolysis bullosa doesn't mean a negative prognosis, however. Most cases have no effect on life span; they just require that parents and patients be more aware of the skin the rest of us take for granted.